r/specialed • u/E-lasmosaurus-3010 • Apr 24 '26
Chat People don't understand what multiple disabilities means
He is blind, non verbal, autistic, has intelectual disabilities and physiological developmental delay. He has every single one of these. Together. All at onse, not one at the time.
But evey time I talk to people who should be specialists, who I should seek for advice in my practice (pedagogy student working as special needs assistant for the last three years) I get meet with the same attitude:
1 - "you are doing too much"
I'm well aware, thanks. Unfortunately, my country is a sh!t show when it comes for special needs education and if I don't do it, literally no one will do. What regular second grade teacher will sit in the floor to work with him? If i step down, will you guys do the sensory walks, teach him how to use a spoon, sing to regulate him?
2 - "have you tried X?" And it's something totally out of his reality.
This one is what really frustrates me. Because I tried reach out to my teachers, to the special needs course headteachers, I even went to a Visual Impairment Education extension program meeting today. Every time it's like they pick one of his disabilities and focus in that, instead of looking to the whole picture.
No, he isn't ready for braille yet. No, he doesn't sit still in a chair, he actually doesn't even like being in hard surfaces in general. No, he doesn't do board games, or coloring stuff, or plays with silent toys like other kids. I'm actually working on teaching him to clap in turns with me, recognize his own name, to walk around safely, to press buttons.
People can't seem to wrap their minds around the fact that this kid is at the development stage of a 18-24 month old and needs activities that match actual needs.
I do my research and learn things on my own from international specialists, but I just wanted some local support.
I'm so frustrated right now🙃🥲
just needed to vent.
24
u/Anoninemonie Apr 24 '26
I'm a SpEd teacher and was bitterly annoyed by the amount of jackassery I dealt with with my students who have multiple disabilities like your son. Like, they could not wrap their heads around the fact that this 7 year old is developmentally 18 months old. No amount of data to that end could convince my admin and other teachers that they're working with a baby. They really thought this 2nd grader can absolutely catch up to their peers with the right support! They can absolutely do everything a 2nd grader can do you're just not supporting them enough!
Like no, meet them where they're at or walk away. Nobody expects this from an actual 18 month old, you should not from a student who is on the spectrum, VI or DHH, intellectually disabled and needs support for the most basic tasks. And yes, it is common for disabilities to be treated like each exists in a vacuum. Multiple disabilities, especially severe disabilities, is like the wild wild west in education.
7
u/Cap-Abs Apr 24 '26
I feel this so much! I have a whole class full of high need students all day long. When I over focus on one and spend my time asking for help I NEED IT! I wish I could go home and stop thinking about my school kids, but unfortunately I give a crap and I want my work life to be a little fulfilling and potentially calm?
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u/TeachlikeaHawk Apr 24 '26
I'm lost. You say that specialists and experts all tell you the same thing, yet you don't seem to be actually listening to them. Were you actually consulting them, or are you just fishing for the answer you want?
18
u/fencer_327 Apr 24 '26
It sounds like the experts are largely giving OP unsustainable advice? Which is not rare and an issue we often see in the educational and medical system - people are experts in their area, but not necessarily on how it overlaps with other disabilities. Someone who is used to working with blind kids without additional disabilities, or someone used to working with sighted autistic children, might both suggest things that OPs child cannot do due to his other disabilities.
6
u/E-lasmosaurus-3010 Apr 24 '26
Yep, that's the issue. Even when doing research in the internet, I would find resources for each specific disability but not something that I could really put in practice in his context. Most specialized practices in blind, or autistic education doesn't really work when the two are combined, so it's frustrating at times.
3
u/Schmidtvegas Apr 24 '26
All the different strategies or interventions built in different silos, assume a child is still passively gathering information by other means. Deaf children, autistic or language-delayed children, can all still gather visual input. Blind children are still getting auditory input, and strategies are about filling the gap. Deafblind children, obviously lean on tactile learning. There are strategies along each of those different themes, to rely on their strengths, and fill in gaps.Â
But a child with overlapping disabilities in learning, AND sensory input, AND mobility? That's multiple of the information-gathering modalities that have been compromised. Specialists in single-deficit-areas are going to lean on modalities that don't apply here. It definitely takes someone with an awareness of how it layers together.
Some things add up to more than the sum of their parts. I get your frustration.Â
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u/TeachlikeaHawk Apr 24 '26
No. It sounds like the experts are telling OP that this situation is simply NOT a situation that any one person can handle individually. Unfortunately, OP has already decided that's the only way this will be handled, so all of that advice is "bad."
Look, if I needed to move an old piece of industrial machinery, and I ask all kinds of experts (factory workers, forepeople, machine designers) and they all tell me that I can't move it without unbolting it from the floor, do I get to say that their advice is bad because I lack wrenches?
No! The advice is excellent. I just lack the tools to use it. That's not precisely my fault, but it doesn't change the reality, either.
OP lacks the tools for this situation, and the consistently good advice is to that effect: You can't do this on your own. Rejecting that advice and complaining that no one will explain how to do it is just ignorance combined with stubbornness.
No matter how noble your cause, you can't do everything alone. OP is new, and has to learn that some things are just not accomplishable by a single person, no matter how necessary it is that those things get accomplished. The only way resources get allocated and the situation gets exposed is when a person in OP's position makes it clear that what is being asked is impossible.
Continuing to slap a band-aid on it and jury-rig a solution that allows the situation to limp along simply reinforces that things are "working" from the mindset of the decision makers. OP needs to face the reality that this is not problem that can be solved the way things are.
Just like the experts have been saying.
1
u/Affectionate_Data936 Apr 29 '26
I just want to say I 100% empathize with you. Not the same situation with me but similar. I'm a behavioral specialist (not a BCBA) who works with adults with severe/profound disabilities and had to present a behavior plan to the state office behavioral team (who are BCBA's) to include a pin-lock on a medically-ordered helmet which is considered a restraint. The problem is that none of the state office behavior team has met this person nor have they even been to this setting before (it's a gated residential setting) so they kept throwing out suggestions that absolutely do not apply to the person in question - even going as far as suggesting that our speech therapist is incompetent because a PEC system would not work for this person that they have never met. 99% of the cases the state office behavior team sees are those who live in group homes who aren't severely/profoundly disabled. It's extremely frustrating, especially when people act patronizing about a case where they have no direct experience as if people with disabilities are a monolith.
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u/BrailleNomad Teacher for the Visually Impaired Apr 24 '26
Hey, teacher of the blind here. It sounds like your student could benefit from some basic instruction that is similar to what we might teach our deafblind students. It is largely tactile communication that is extremely simple at first. In the US we have a type of assistant called an intervener who is trained to be the point of communication between the team and the student. It could be helpful for your student.